Seven Year Itch
(Article as submitted, December 2018 to The Mighty http://www.themighty.com)
I’ve been itchy for seven years. It’s time to scratch that itch. In November 2011 my life turned upside down. I’ve always had allergies, but what started as sudden severe abdominal pain signaled a new level of allergic reactions.
I now know that I have MCAS, or Mast Cell Activation Syndrome. Mast cells are a white blood cell, they are the gatekeepers for allergic reactions and inflammation. They are in every tissue in the body. Mast cells store granules of chemicals such as heparin and histamine (and about 20 others). In MCAS they degranulate when they shouldn’t, sometimes releasing them all the time, sometimes they erupt at the slightest provocation. There are other disorders and syndromes strongly associated with MCAS, and I have several. One is a connective tissue disorder called Ehlers Danlos Syndrome (EDS), which means my joints are way looser than they should be. I also have Postural Orthostatic Tachycardia Syndrome (POTS), which means my body doesn’t respond properly to position changes. Standing is tortuous; within five minutes my BP is so high that I start to black out. I am slowing gaining ground with all of these challenges, they are intermingled. MCAS is very different from patient to patient, one of the challenges in fighting this disorder. By far the most restricting thing for me personally is ridiculously frequent anaphylaxis. Foods, food smells, fragrances, allergens, smoke, etc., can all trigger it. At times it was up to four times a day. I was in a constant anaphylactic state for months on end, and hit a point where eating anything led to anaphylaxis.
There is no aspect of my life that hasn’t been affected by my illness. I have neglected my family and friends, my finances, my future. My career is over, most activities that I once enjoyed are beyond my capacity. I never could have guessed seven years ago that this would become permanent. I have amazing aspects of my life, I have a lovely hubby and great kids, I have sisters and friends. I live in a country with universal medical care, I have extended disability income, and I live in one of the most beautiful places in the world. But this is hard. Very hard.
Seven years. We’ve all heard of the seven year itch in reference to marriage, but it applies elsewhere, too. Seven years is about the time most people’s brains to shift and say ‘this isn’t going to change’. Suddenly, ‘He left toothpaste in the sink again.’ shifts to ‘I’m going to have to see gobs of goo in my sink every morning for the rest of my life!?’. You can kind of push things aside, ignore the irritations, adapt approaches, etc., but after a time, if it was going to change, it would have done so already. You hit the point where you put up and live with it, or have to make a dramatic shift in your life. Quite suddenly, one day, you say “I’m done. I can’t do this anymore.”.
That seven year itch isn’t just about personal relationships. What a difference it is to say “I can’t tolerate the smell of food.” vs “I’m never going to a restaurant, party or family dinner again.” Things that were ‘I can adapt’ seven years ago shift to ‘Do I want to adapt?’. It generates questions like ‘Is the fight worth it?’ ‘Is this a life I can face for the next 30 years?’. Survival is not enough, I need to actually LIVE. It’s almost as if a switch was flipped when the permanence of this situation becomes clear. My visceral reaction to that list is “Hell, no. I can’t live like this for the rest of my life!!”. Since I have all intention of continuing with the ‘live’ part, I had better fix the ‘like this’ part. I have a LOT of living yet to do.
One of the most amazing aspects of this journey is the others I have met along the way. I wouldn’t have survived without them. It’s a fascinating group- I have noticed that many (if not most) of us got sick(er), and had a major increase in our symptoms of MCAS in the fall of 2011 (there appears to be another ‘blip’ in the fall of 2015, but it doesn’t seem quite as marked). When I see people with MCAS in the media, their timelines match. I know family friends across North America, and next door neighbors, who got sick at the same time I did. There’s no way it’s merely a coincidence. The groups I’m in are a bit like any support group, from parenting to managing diabetes. There something very powerful about tackling the same stages of the journey together. The weird part is that we don’t have much of a reference of who went before us, only a very few scouts are ahead of us. But why? Part of it is that it’s a newly described unifying diagnosis- connecting the dots between all of the health issues we’ve had over our lifetime, all of our ‘atypical’ or ‘idiopathic’ symptoms are explained. It’s more than that, though, it looks like there is also massive increase in cases. That’s no surprise when we think about increasing inflammatory disorders like arthritis, food allergies, scent sensitivity, etc etc. We all know something is going on, MCAS could help us figure that out. What is going on is far from clear, but it appears that MCAS involves a genetic predisposition, and something sets it off (virus, toxin, solar flare, alien invasion… there are too many possibilities!) Like building the railway, there have been surveyors before us, but the crews move with the leading edge of those rails, and solve issues as we go.
This gaggle of patients have all come to a similar place in our journey. We’re done. We are fed up, we are tired, we have put our lives on hold, wishing for the doctors to figure this crap out and treat us with respect. It’s exhausting. We fight the same battle with the identical physicians, each getting different outcomes. We flock to the good doctors, meaning they have insane waiting lists, or they end up being put in an impossible situation with other physicians. We are so fed up with re-fighting the same battles. It took me 7 months to get an iron infusion. It shouldn’t be that hard. The effort spent on trying to prove we aren’t sick could have treated us all twice over. It is infuriating.
Many of us have come to the realization that the medical system itself has been abusing us, that we have come to accept the most outrageous things. Expect it, even. Our fear of losing what little care we have holds us back. I have been left on an ER floor, told I was ‘hysterical’, had epinephrine withheld during an anaphylactic reaction, told that my pain was untreatable, sent home when I had septicemia, not told about a brain tumor for a year, and on and on…. I was treated properly in an ER last summer in a different province. In many ways it’s analogous to an abusive relationship, when you are treated properly, it’s a shock. The realization of the level of abuse I have tolerated sickens me. I’m not the kind of person who tolerates abuse- and I feel deep, deep shame that I allowed it to get this far. That was galvanizing. I can be treated properly in the Canadian medical system, and moreover I deserve to be.
Each time something happens, I jump through hoops to get it solved, then I just brush it off, breathe a sigh of relief that it could be worse. I also know that if I accept it, yet again, nothing will change. I will keep going in circles; refighting the same battles over and over again. Other than venting my frustration, I haven’t been able to make any real inroads with the complaints process, I was too busy staying alive. And so are far too many of my friends. We all haven’t had the courage or drive or energy to fight properly, we all hoped it would improve, that with time our care would get on track. Many of us with milder MCAS don’t even mention it to their physicians, because it’s asking for a nightmare, or we self medicate, or use ‘creative’ solutions, but none of that helps our physicians to see the bigger picture. The seven years of itchiness has been hell, we are done. We’re worn down, grumpy, sick and determined to not live like this for the rest of our lives.
People with MCAS are alike in a lot of ways, and our experiences are hauntingly similar. In addition to the health challenges, all of us have had to deal with accusations that it was all in our head. Some escape the full nightmare,but some of us have been accused of all sorts of things. I was accused of everything from faking tests to being able to stop my heart intentionally. (How it seems easier to accept that I can stop my own heart, then that I am having anaphylactic reaction to rice, I really don’t know.). Personally, when mistakes were made, instead of facing those mistakes and moving on, they intentionally falsified my chart, and maliciously made it very difficult to get care. I was accused of having ‘factitious disorder’, and it is still front and centre on my chart, three years later. (If you aren’t aware, factitious disorder is the current buzz word for hypochondria, Munchhausen’s hysteria, etc etc. It isn’t in the DSM, there are no criteria for it and I can’t find a single case of someone who accepted the accusation, or was treated successfully. And I make no mistake- it is an accusation, not a diagnosis.) Many of us have been treated so poorly that it has actually caused PTSD, self included. I didn’t have a mental health problem when they accused me of having one, so they gave me one. I don’t want it anymore, I have no intention of keeping it. I’d prefer to just leave it behind in some field to be forgotten, but I have to return it to them, I will.
The nature of MCAS itself doesn’t fit with current medical and social paradigms. Usually, when people are this sick, within five years they recover or they die. We are all just as sick as we were seven years ago. I require active medical attention, I’m on 14 different medications, a liter and a half of IV saline a day, and been on a 24/7 Benadryl IV for two and a half years… and there isn’t an end in sight. We have better control of our symptoms, but malnutrition, constant physical and psychological stress, PTSD etc. are catching up with us. I feel like I have come to a turning point. Do I resign myself to this level of incapacity, this level of abuse (whether by neglect or action), accept that this is as good as my life will be, or do I stand up and fight?
And so we keep fighting. We know e aren’t alone, we aren’t that weird, because we have a hundred friends who are just like us, and just as fed up. We see each other, but the medical establishment (in BC at the very least) hasn’t seen us. The moment someone with MCAS finds others with it, there is an immediate recognition that we have found our people! To us, we seem so obvious, but that hasn’t translated to the physicians. I get it, we are infuriating and exhausting patients- the same medication can do us in or help a ton. Something that worked beautifully six months ago suddenly can’t be tolerated, food we couldn’t eat last week is fine this week… We have challenges in every organ system in the body, so we need a raft of specialists, which adds a whole layer of complexity. Many of us don’t tell our physicians all the details, knowing it could land us in the ‘crazy’ box. But I’m certain that the moment physicians ‘see’ us, it will make their jobs much better. Things like Fibromyalgia, CFS, IBS, etc etc., are notoriously difficult to treat, it must be very frustrating to have a patient you can’t do much for. All of those systemic inflammatory conditions involve mast cells, (which is not to say that everybody with those conditions have MCAS, but a huge, huge number of them almost certainly do. There even appear to be links to autism, which has wild implications). Looking at them through a mast cell lens could immediately relieve suffering. The monetary, human and societal costs involved with having a large number of people in the prime of their life being partially or fully incapacitated is astronomical. I predict that tackling MCAS will have broad societal payouts bigger than we can currently fathom.
So how do we tackle this? I’m reminded of The Who’s in Whoville. Here we are, living our lives, and suddenly the earth tips, the climate changes and we are on shaky ground. The elders keep repeating that all is well. We know different. Ignoring it isn’t an option. We can’t do it as individuals. After seven years, patterns are set; overcoming that inertia will require a major force. We need to be heard, our survival depends on it. Maybe, just maybe, if we all work in unison then we can get the message through. Let’s take Dr Suess’s advice,
“Don’t give up! I believe in you all!
A person’s a person, no matter how small!
And you very small persons will not have to die
if you make yourselves heard!
So come on, now, and TRY!”
We must tell of our fear,
we must shout,
inside and out.
We are here
We are here!!!
#WeAreHere